HealingWell
Search Close Search
☰

"Biochemical recurrence and failure" said specialist yesterday

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/21/2016 9:23 AM (GMT 0)
Hello all,

We had our 4 monthly check with Radiation oncologist yesterday after a worrisome and steady incline of PSA over the past 12 months.

He looked at the PSA numbers and conceded that it is fair to say that the radiation has not been successful in knocking out all the cancer, and that it would be a reasonable conclusion to add that there are probably mets lurking there somewhere.

My husband is due for a full body scan tomorrow to see if this shows anything, and then again to have the big guns PSMA PET CT scan in January (12 months after the last one). Apart from the fact that I desperately wanted to say "I told you so" to R.Onco , I kept quiet, because even though I suspected as much, I certainly did not want this scenario to occur.

He made an interesting observation in that he said some of the more advanced and aggressive P.Cs he has worked with, put out a very small amount of PSA, so he does not rely on the numbers themselves, but rather on what the numbers are doing over a period of time.

So, on with the waiting game.... we will just have to "suck it and see" ( as we Queenslanders say!)

Bum and blast!!!
Posted 9/21/2016 10:41 AM (GMT 0)
Yaamba, that sux. It does look like your guy is right on it. Doubling time is about 6 months, so it's time to do something. Best of luck to you....
Posted 9/21/2016 11:21 AM (GMT 0)
Sorry about the results. Hope for good news from the scans. You are correct in that some rare forms of prostate cancer do not rase your PSA. That is the case for me. In that case it is up to scans (CT, bone, etc.) to keep an eye out on the cancer.

Good luck.
Posted 9/21/2016 9:48 PM (GMT 0)
yaamba- So in January of this year you had a PSMA Pet/CT when PSA was 0.65 and nothing was picked up? Was that a 68 gallium PSMA/CT? Why can't you have another advanced scan now? That level of PSA 1.4 is likely to find what's there so you can made some tx decisions now instead of waiting 3 some months. Am I wrong on this?
Posted 9/21/2016 10:16 PM (GMT 0)
Hi JoJoLA

You are absolutely right. I did ask for a repeat PSMA CT scan at this stage ( I'm sure it was a 68 gallium) and not wait until January, however there are only a few of these machines in our state and apparently the wait is lengthy. I felt I was bossy enough at the appointment without insisting on the PSMA, as I am not the one with PC. My husband was satisfied with having the body scan done here locally, and then a follow up scan done in Brisbane at a date after this regardless of what the scan shows. I have to respect his wishes even though to me that is a waste of time and effort. Brisbane is the closest centre to have these newer machines and its a very long way there and back, but certainly worth the trip.

Also, I wondered whether the specialist was hesitant about requesting the scan again as it is a very expensive procedure none of which is rebated with Medicare or our own private medical fund. No doubt though, if I have MY way, we will certainly be doing just that, hang the expense and the time taken to do so. We will see specialist again in about 3 weeks time, and I know by then I will have chipped away little by little to get the PSMA done asap.

My husband jokes with me often, and says he will use Sinatra's swan song "I did it my way" when the time comes, with just a bit of tweaking of the words.... he says it will say "I did it HER way!"

He still continues to be fairly optimistic about life in general, although he has become fairly hermit like of late.
Posted 9/21/2016 10:39 PM (GMT 0)
yaamba - how about a sodium fluoride PET/CT? Way better than old fashioned bone scan.
Sorry about the hermit...my husband and I, while busy, prefer staying home on the range. Tons of travel with work, sort'a over it.
Posted 9/21/2016 11:30 PM (GMT 0)
Gleason 9 is brutal. Hang tough!
Bob
Posted 9/21/2016 11:45 PM (GMT 0)
I'm sorry to hear about the progressive PSA. That sucks.

I frankly don't understand what "treatment decisions" you are talking about that earlier imaging could possibly help with. It is unlikely, given that he had that much radiation, that the failure is local only (which might be salvageable). So the only thing imaging can tell you is if there are multiple mets - in which case starting on docetaxel would be a great idea. Otherwise standard hormone therapy should slow it down. I think you can save your money for diagnostics and treatments that can actually make a difference.
Posted 9/22/2016 5:40 AM (GMT 0)
Hi again,

Tall Allan, Docetaxel WAS one of the pathways (or treatment decisions) specialist mentioned, as well as a list of others including restarting hormone therapy which he had a few years ago. And you are right, we are looking for multiple mets elsewhere in the body, but especially in the bones.

In our state with our health cover, bone scans, and standard MRIs and CT type scans are provided free of charge, and even Luprin injections are only a few dollars worth. But as I mentioned, when it comes to health, counting $$$ is not an option.

Bone scan done today, now we wait for results.

cheers
Posted 1/31/2017 4:02 AM (GMT 0)
I realized I had not updated this post for a while, and am doing so, as I know there are other men out there who are G9 and who (like me) look for progress or otherwise.

I had posted that I was concerned at my husband's rising PSA...all this is in previous posts and can be easily read without me repeating it.

Husband had a PSA test in October 2015 and it had risen yet again to 1.5. In January (just a few weeks ago) he needed a blood test for an unrelated matter and I asked whether we could have a PSA test done at the same time.

I was more than upset when test came back at 2.2 (1.5 in late October). I dearly want him to see specialist for some way of slowing the growth, but husband does not want to. In fact, when the specialist had to cancel the January appointment for his personal reasons, we were re-scheduled for April..... another three months. Husband is quite happy to wait... I don't think he wants to know. And that is our dilemma, because I feel that knowledge is power, while he takes the approach that no news is good news.

I have agreed to respect his wishes and have done so without grumbling...well, not out loud anyway and not to him. But I do wish he would be more concerned and DO something. He says he feels well enough, and although not as active and feeling as well as before, he says he has a good appetite (which he does), he enjoys life (which he does), and he enjoys spending time with family....as well as more expensive reds and scotch! He goes to the gym daily.

I realise there is nothing much to respond to in this post, but as I cannot vent to him, I am doing it here! Sorry.
Posted 1/31/2017 4:49 AM (GMT 0)
yaamba, re the PSMA scan, if you (or hubby) decide you do want a repeat, have you considered travelling to Sydney where Nepean hospital are doing scans for free. Don't know why, though I asked several people and got no better answer, than "it is hospital policy to provide this as a free service".

Not sure if they are restricting to NSW patients only, but I am in the ACT and got a free scan. But then there are a number of inter governmental agreements between NSW and ACT.

Would be worth asking, assuming you are willing to take a trip down the Pacific Highway. I can recommend excellent apartment accomodation right across the road from the hospital.

Chas
Posted 1/31/2017 7:11 AM (GMT 0)
Hi yaamba,
I reread your posts and couldn't find the results of bone scan. Do you have to wait until your appt to get those?
Please feel free to check in and vent anytime. A few of us have started posting again on Caregivers Corner thread for the much needed daily venting, sharing and camaraderie.
Beth
Posted 1/31/2017 9:29 PM (GMT 0)
Hi Beth..

Bone scans came back relatively clear...relatively as they have indicated some arthritic changes in several spots which glowed white. I even worried about those in case the white dots were hiding something more sinister. I am not normally pessimistic but I have bad feeling about this.

I know that many caregivers feel similarly.....its quite different. I think i could handle this better if I was the one unwell and my husband was the carer. Its a general feeling of helplessness and losing control of a situation.
Posted 2/1/2017 1:41 AM (GMT 0)
As a man ages...he cares less about what others think...even his spouse ...and will do what he wants...if you really think about it would you really want it any other way...me...I got lucky...I've been that way my whole life...now my spouse is like that and thrives on the personal freedom... " what doth it profit a man.......? "
Posted 2/1/2017 7:17 PM (GMT 0)
Yaamba, don't feel bad about venting away here. We are all going through very emotional times and understand. It always helps to hear what others are going through. And I sure can understand how overwhelming this can all be sometimes and I admire how your husband can find satisfaction in just feeling reasonably good day-to-day and is able to enjoy life, expensive reds (which I miss) and all! smile Best of luck to you both.
Posted 3/17/2017 6:42 AM (GMT 0)
Hi Yaamba, I have noticed your posts & just thought I'd register & do a quick reply. I'm in NSW, not sure where u r in Qld. but is a lovely state. I was born in Toowoomba a year after your hubby, anyway what I wanted to pass onto you is a couple of things.. first I had a RP in 2011 after about 18 mths my PSA started rising , got to over 0.5 , my Uro. said time for Hormones so went on Andracur, this worked for almost 2 years, then mid 2015 my PSA jumped to 5.47, then 2 weeks later up to 8.73, got back to my urologist. & he says that is not working probably feeding the cancer now so started on Lucrin, that brought my no. down to 1.04 in April 16, that's acceptable for now next test in Oct. 16 it was up to 32.8, my uro ordered bone& CT s saw him in Mid Dec & he says all the scans are clear but my PSA had risen to 88.8 😡..he then told me about the PSMA PET scan that was available in Newcastle, so I was able to get into there in mid Jan. this year at the Mater Hospital ( my Uro had said I will probably have to pay $600 or so,ok with that, after the test I asked how much , the lady said that's OK no charge so thanked her & went on my merry way) got the results at my Uro. a week or so later & got a real blow, it showed numerous small intensely PSMA lesions throughout my body skull to pelvis & as well as large avid nodes in my pelvis etc.. well what does all that mean, well because it hasn't showed up in the bone scans ( I had an earlier one as well ) the Uro likened it to lots of seeds in my bod but as yet they hadn't put down roots(🙂 Yea one plus) so next ? what next he recommended Oncology as no more HT that will work( he had put me on Casodex when I had the first spike but then said stop it when it went 88 as wasn't working).. I said no thanks to the Onc. as I had already booked in to see the clinic called NIIM at Robina.. that's ok he said, now that is what I want to let you no about.. I spent 4 weeks there in February only been home a couple of weeks but if you have the means ($), I would look into it.. I'm not saying I am cured , I won't know even if it is working for at least 3 weeks when I get my PSA done.. it is a very intense treatment but you have no side affects when you finish, & to me that is a big plus, I doubt your husband will have the conviction to go through with it though by what u r saying, which is a pity as when anyone gets this or any disease you have to be positive about it.. I'm reluctant to say too much about it or how I expect to go but I do have a deep belief it will work.. it would be an idea to contact the clinic, google NIIM & have a read.. u have to go on a strict diet & I am taking other things since being home that was advised by the Dr there.. if you need more info I'm glad to help if you can contact me direct( not sure if that is possible) !! Kind regards Ross
I didn't say I got a test just before I went to Qld. just to have a base line & my PSA had doubled again in 6 weeks to 162 , that is 16,000% increase in 8mths..😩🤔 so your hubbys 1.4 is not very high.. my GS was also 9 & PSA prior to RP was 6.4
Ross
✚ New Topic ✚ Reply